All or Nothing

Hello Friends

First, for those who signed the Parkinson's petition I shared, Thank You.  Here is a transcript of the debate.  It's a start.

Parkinson's Charter Debate

It's that time of year again when ICAD takes over my desk.

I am not following the prompts.  Here's the first few days

Title Card

1/61 mixed media collage using some very pretty paper that was wrapped around some Easter eggs.  I did two slightly different versions.

2/61

Mixed media incorporating an ATC and Nuvo drops

3/61  Made using up scraps from a previous project

4/61 Mixed media incorporating an ATC. photo does not do justice to the vibrant colours or the gilding wax 

It's not easy this year and with the unpredictable nature of Parkinson's I know each card might be the last I can manage.  Then again, I could go on for months, even years, being able to do art. That's the nature of the beast.

Since I last wrote things have changed. Here's a quick update. As I told you my medication was changed. I had a consultation with the doctor on May the 6th. On May 9th he wrote to my GP. It took until may the 28th for the GP to get back to me regarding the letter. in the meantime, I had already changed my regime based on what we had discussed. The GP was way behind and having to play catch up.  Then just this last week, I've had another phone call, my Parkinson's doctor is tweaking my medication again. Is this going to take another month now before my GP catches up?

Finally, a care package has been put in place.  The agency started with me last week. I have one hours help a day. However, I am to be reassessed for more help up to three more hours a day.  

I have lost count now of how many people have been sent by the council to assess my bathroom. I am entitled to a grant for conversion, and every little, no matter how little helps.  It's just taking forever!

Suddenly, after months, even up to a couple of years, of frustration and waiting, I've got people throwing themselves at me from all directions now.  Carers, cleaners, general help and companions. It's an all or nothing situation.  My head is in a spin!

Until next time

Debbie xx

Medication Mayhem Misery

Hello Friends!

Thank you all for your kind comments on my last blog which was a bit of a Pity Party.  

While I am trying my best not to wallow, it isn't easy not to.  A sad fact compounded by the events of last Tuesday afternoon.

I had a long overdue consultation, if you can call it a consultation, via video link with the doctor who is overseeing my Parkinson's treatment and management.  I say this because his title is Doctor for the Care of the Elderly.  In other words, he looks after the over 60's and does not specllialise in any one field.  I know he was seeing my dear friend for COPD, a far cry from Parkinson's.  This in itself does not instill me with confidence.  Anyhow, I digress.  The Parkinson's nurse was also supposed to be linked in to the video call but she failed to show up.  

I had to put up with the usual diatribe that I should consider moving house, leaving the area and uproot hundreds of miles away to be nearer to better care provision than is offered in my remote area.  This would also offer me better socialising opportunities {do I want that?} with no thought for the few friends I have here, or the stress that would come with looking for somewhere else to live, buying, selling, moving and so on.  Most of us have done that, would most of us want to do it when we were already not in the best of health?  Uproot our entire world where our roots run deep in exchange for pastures new?  Giving up what few friends you have and be dropped in some strange and alien community miles from home.  No, not for me, thanks all the same.

Then came the discovery that for many, many months I have been near overdosing on a tablet that was prescribed to be taken five times a day and which should have been no more than twice a day. Heigh ho, just when you think your management can't take any more twists and turns.  I take copious notes during such consultations, and during this one the Doctor made a minimum of three changes of mind as to what I should be taking and in what combination.  This is par for the course, and I wonder if it doesn't lie behind me being given the incorrect dosage instructions.

So, effective immediately, I'm now on this new, lower dose and guess what?  My tremors are now twice as bad today as they were at the start of the week.  

No one knows who is to blame, everyone is blaming someone else, and I'm stuck in the middle.  I have already started making enquiries.  I don't want to get anyone into trouble, Lord knows the department could do without that, but my faith in the system is totally shattered now.  First things first, I have been advised to request to be copied in to the results of the investigation.  Now, I have not asked for this but have been told that when any mistake is made it must be investigated,  So, Monday morning I will be in touch with them over this.  Then, I will request a complete transcript of my medications since the beginning of my diagnosis. After that I will decide how to proceed, but right now I am stuck with a team of medical providers whom I can no longer trust to do the best they can for me.  

Watch this space!

In the meantime, there have been no applicants to my advertisement for assistance at home.  This is worrying indeed.  I need help at home desperately now.  My case worker on the Direct Payments team at the Council left and somehow my case file got misplaced.  If I hadn't phoned to follow through, I would still be missing in the cracks that seem to be everywhere.

Sometimes I feel as if I am in freefall over no man's land.  It is making an already stressful time even more difficult and more stressful. 

At least I have a gardener!  We've planted up some osteospermum Purple Sun, so hopefully they'll be providing some stunning colour soon.

Until next time
Debbie xx

That Which I Hold So Dear . . .

Hello Friends!

Happy May Day!

I haven't been around for a while as I'm not in a good place at the moment.  There are times now when this horrible medical condition is overwhelming and I am hoping next week's much needed appointment will help sort something out to enable me to resume some degree of normality.

I have been trying to think what aspect of Parkinson's to address but there are so many it is difficult to know where to begin.  There are the day to day living experiences and changes, the challenges of adapting, of not being able to adapt, the financial burden {something all people with any sort of disability get lumbered with}, transportation issues, mobility issues, mental health issues, finding reliable help, even finding unreliable help, or just plain pouring out my angst and misery at the position in which I now find myself issues.  There's an endless list.  I promised myself I wouldn't wallow, but these days it is sometimes difficult not to.  Add to all of the above, the ever increasing worries over our NHS and medication shortages and a perfect storm is brewing.

The last few days have been particularly difficult with the arrival of such gorgeous weather at long last. Yet, here I sit, unable to go outside for very long because I am unable to put my sun screen on evenly, and all I can do is watch the listless clouds drift slowly by and ponder on what I would have been doing in these glorious spring mornings and evenings {afternoons are too darn warm}in what should have been the fun years of my retirement.

I hadn't planned to retire upon reaching State Pension Age, but it has been forced upon me.  My plan had been to either work a small part time job or work from home selling my makes at craft fairs or on Etsy. I was to have plenty of free time to carry on hiking and rambling across my beloved Shire.  It was not to be, ah! the best laid plans of mice and men often go awry, indeed they do, in my case they went awry and away.

It was not to be, and it is starting to become difficult in accepting that I will never be able to do again the things I hold so dear.

Oh, but what a difference in a week!  Ten days ago I sat huddled under a blanket keeping warm, now the last few days it's been a struggle to keep cool!  At 5:30 a.m. this morning, as daylight began to creep over the east facing hedge, I was opening the windows of my cottage wide to let in some cooler air, trying to keep the living room as cool and comfortable as possible before the midday heat arrives.  I've still got my vest on; I've cast not a clout but might today as it's already hot indoors.  Ironically, next week it seems we shall be glad not to have cast those clouts as colder days are predicted again.   One thing that is helping me keep hydrated is my new water bottle by Rhiannon Art

A little pick me up treat that will be useful in the hot summer days. It comes with a choice of caps, straw, flip top, or wide mouth and holds 750mls of hot or cold liquids.  Proud to be Welsh!

Until next time

Debbie xx

April 1st 2024

Hello Friends!

Happy April 1st

Another month starts today, this one is if April showers do come your way, they bring the flowers that bloom in May . . . 

Late to the party, the pink camellia is just now coming into full bloom and the red one just opening up!

I actually did some gardening yesterday, well not gardening proper but I trundled around my borders using my rollator/walker to keep me upright, and with a pruning shears in hand and a long handled pruner too, I did a teensy, tiny bit of tidying up.  I know I will never garden properly again and it does make me sad, but it was something out in nature and it felt oh! so good to have the sun on my face if only for a short while.  Hopefully there will be more to do in the coming days, it isn't much but it is better than nothing and, like I said, that feeling of warmth from the sun, after the horribly, long, cold and wet winter was just amazing.

I sprained my wrist and might have made it worse by pruning!  Yikes.  

Your responses to my last blog have been amazing.  Thank you all, and especially if you were able to sign and share the petition.  Every signature counts and matters!  There will be more coming on Parkinson's in the near future as I sift through everything.  As some of you said in your replies, we all of us know so little about it.  Education is a key word!

Until next time

Debbie

Into The Unknown With Parkinson's

Hello Friends!

It's been a while since I've been on Blogger.  I have decided to change tack and write about my Parkinson's journey {don't like using the word "journey" but it'll do for now} although it's more of a voyage into the unknown, like the Spanish Conquistadors and Christopher Columbus and all the other explorers who sallied forth into the great unknown.  Only they had a choice, I don't.

So, what is Parkinson's?  First things first. You may know it as Parkinson's Disease, but there is a move now to drop the word disease which gives the impression that it is contagious. It is not contagious, and it is now being known simply as Parkinson's.

Parkinson's is one of the fastest growing neurological conditions.  In the UK alone there are approximately 145,000 people diagnosed with this condition {around 83,000 men and 60,000 women between the ages of 50 to 89} and it is calculated that by the year 2050 there will be over 25 million cases worldwide.  It is more common amongst men than in women. It is progressive and debilitating, it robs you of being able to do the simplest of tasks, and there is no known cure, and it remains one of the most underfunded and under researched of medical conditions.  Try to imagine what it is like for your brain to be telling you to pick up that book but your arm and hand just will not comply and you hover above the book unable to grasp it.  Or when you are walking along, something that is automatic but all of a sudden your feet are rooted to the ground, your torso maintains momentum and over you go on your face.

It sneaks up on you and awareness of changes in your own body and discussing them with your GP it's about the only way of obtaining a diagnosis. There is no definitive test for Parkinson's, yet there are about forty different indications that can manifest years before the condition is suspected, never mind diagnosed.  Little things we might blow off as something else.

This is my story.

As many of you know I was a caregiver for my mother for several years. During this time, in 2015 I developed a frozen shoulder in my left arm. It was unexplained, I had no idea what was causing it, but because I was caring for my mother, I pushed my own medical needs aside to continue caring for her. Time passed and there was no ease to the frozen shoulder, but I pushed through the pain and mobility issues because I had to. Sometime in 2016 my left wrist started to hurt, and at that point I started to think perhaps I had a trapped nerve, or possibly arthritis. The pain was intermittent and became more of a minor inconvenience that I tolerated and ignored. Had I known that these two things were early symptoms of the onset of Parkinson's I would have probably gone to the doctor far earlier than I did. In 2017 the frozen shoulder finally started to ease but then I notice my little finger started twitching from time to time. Over the coming months the twitching started to spread until it was my whole hand from my wrist down. People were starting to notice, but still I refused to go to my doctor. My mother's condition deteriorated she went into hospital in early 2018 and from there she went into a care home. I was travelling for about eight hours a day, back and forth to visit and as a result didn't even give my tremors a second thought. She passed away in the autumn of that year and I focused on trying to rebuild my life by going back to work trying to pick up where I had left off 12 years earlier.  I had noticed I was getting slower, but I put that down to being older and less fit than I had been, and to my body's reaction to the cumulative stress of fourteen years of being a caregiver. I was incredibly tired and often found myself having to push hard to get through the day. It was winter and our bodies react differently, and I kept telling myself I'd get back on track properly after a winter of hibernation and self-care, then come the spring I would be able to start walking on a regular basis, regaining my former fitness. Of course, the next thing to happen before I had a chance to even think about putting myself back on track was the pandemic. We all know what that did for so many of us, no need to explain further that it knocked my intended recovery for six.  Of course, I know now there will be no recovery for it is incurable and progressive.

I muddled on, there was no improvement to my tremor but it wasn't getting any worse and I genuinely started to believe that it would heal itself eventually because nerve damage can take a while and there was no need to bother the doctor with something that would heal itself in the middle of the pandemic when appointments were conducted over the phone. However, in the summer of 2021, I noticed a tremor in my left leg. That was when I realised there was probably something that would require medical attention happening and I went to visit my GP. Everything was still very much about wearing your masks and keeping your distance, so off I went only to be told that he was very concerned and there was a high likelihood that I had Parkinson's.  He was thorough examining me and in questioning as any GP could do without being specifically qualified in neurological conditions. It seemed that so many things over the past four years or so were indicators. Sudden onset of an unexplained frozen shoulder being one of the major early indicators, even before tremors started to develop. The slowing down of movement and the increased tiredness, again both indicators. So I had evidence of four indicators and ignored them all through self-diagnosing. He sent a referral off to the local hospital and by the end of September I had been seen and officially diagnosed.

Since then, it's been like a roller coaster.  I will talk about my experiences over the coming weeks.  It won't be all about Parkinson's, there will be other stuff, but if you don't want to hang around, fair enough.  Thank you for being here this far.

In the meantime, please consider signing this petition to get better recognition, support and funding for research into this heinous condition.

Increase funding for people with Parkinson’s and implement the "Parky Charter" - Petitions

Until next time

Debbie xx

An Update

Hello Friends!

The situation has been a bit rough here lately and I've been on an extended social media break. Thank you to those of you who have noticed me by my absence, and especially those of you who have been in touch checking in on me. I am still here, but changes in my medication mean I'm not up to scratch at the moment.

I hope to be back reading your blogs and writing my own soon again. In the meantime, I don't know why I had this thought this morning, but it seems rather appropriate after seeing the news.

"Thinking if I was one of the astronauts stuck on the ISS looking down I'd just ask them to send up more food, toilet paper, and 6 new pairs of M&S knickers and say I'm staying up here."

Until next time

Debbie xx

Let Yourself Be Drawn . . .

Hello Friends

I came across this quote, one of many of the wise words of the great Persian poet, mystic, theologian and scholar, Rumi. 

“Let yourself be silently drawn by the stronger pull of what you truly love. It will not lead you astray.”

The love that pulls me is creativity.  I have passed through a crossroads.  I am now being silently drawn by the pull of a different aspect of that love.

I think I was born creative because by the time I was four years old I was already learning basic embroidery, knitting, and baking.  I would create in the evening as we sat around the fireside before bedtime, and I would come down in the morning to discover, to my delight, that the fairies had come in the night and put right my mistakes, picked up the dropped stitches and left little notes of encouragement! 

I used to help my Nanna in the garden, growing and creating new spaces and plants.  In turn, this creativity became growing food and creating delicious and nutritious meals to feed the family.

Now , not through choice, I'm turning away from the creative side of gardening and returning to the creative skills of my younger days.  

These days my creativity is keeping me sane in the madness of the world that spins in a web of deceit, lies, and tragedies of all kinds.  If I did not find solace in my creativity I don't know what would happen.

My latest foray into creativity is dabbling in junk journalling.  I'm not one hundred percent certain in the definition of junk journalling, it seems to be different things to different people, but here's what I'm getting up to with mine.  I started off with a blank spiral bound journal and now I'm basically decorating each page with ephemera, papers, fabric, stamps, images and more. You'll get the drift as the blogs go by.  Here is the cover.

First I did a mock up and took a photo when I was happy with the placements

then, once happy with the arrangement I glued it all in place

I used a mop up paper, ephemera including recycled Susan Branch calendars and some of a prize I won in a YouTube giveaway on Handmade by Shirley, stamps and die cuts.

I have already completed several pages which I will share in the coming days.  I think my blogs will be shorter from now on as I am getting very tired very quickly and must adjust accordingly.  Thank you for your support and understanding.

Until next time

Debbie xx